Lori the echo won't show anything about POTS, which can be even harder to get diagnosed than connective tissue disorders. You may luck out but you may need to research someone local(ish) to you who has a clue, maybe through a support group website. Note: I am not sayin he has it, just that its hard to get assessed by someone with a clue. I passed (failed??) the diagnostic tests with flying colours and there is no doubt I have POTS but I still get random drs doing weird meaningless "tests" and giving me the "that's all in your head honey" look....
Ultramarina, I haven't had any of my kids formally diagnosed, though all of them will probably need to be at some point. But I know what to watch for because I am diagnosed. What is interesting though is that my HG+ girl was described by our OT as having neurological integration in line with her iq (I assume he speaks only of neurological issues as they relate to OT assessment), and that this was the only reason she was not more obviously disabled by her low to e and hypermobility). He was astonished by some of te things she could do, which he felt should not be physically possible for her body. My point being - in some kids there are ways of compensating. My MG girl, as far as I can tell, is actually not as bad wih the low tone and hypermobility but she has integration problems and "looks" worse....
Last edited by MumOfThree; 02/21/13 01:27 PM.
